Although it has been 16 years, I have never forgotten a single detail of my son’s autism diagnosis.
The sterile exam room overwhelmed my senses.
Waves of peroxide and latex stung my nose.
Unwelcoming, stark white walls irritated my eyes.
The click of the neurologist’s pen as he scribbled down notes, void of any emotion, signaled my ears that he was about to tell me something very unpleasant and devastating.
My mouth was dry, seemingly full of cotton and my heart raced as I awaited what I thought would be more details about Skyler’s seizure disorder.
In a very matter of fact tone, he said “Your son has autism, to what degree of severity we don’t yet know.” Without a moment to process this autism bomb dropped in my lap, he continued with his urgent recommendations for “getting the most out of Skyler while we can,” which primarily consisted of milestones that he MUST meet on a specified timeline or all hope would be lost.
As I wiped away tears and picked my jaw up from the floor, the physician, with the horrific bedside manner, handed me the name and phone number of another parent with a child on the spectrum. He said, “You should reach out to her and get an idea of the special programs and residential facilities in the area where Skyler could get the best care.”
I was completely dumbfounded and for likely the first time in my life, I was speechless!
Hearing that your 2-year-old child has autism is extremely tough to understand and accept. But for me, the more shocking concept to wrap my mind around was the grim prognosis given for Skyler’s future should he not progress according to an absurd deadline for each important milestone.
After leaving the doctor’s office that day, I started researching every therapy and early intervention I could find. Our home became a revolving door of therapists and my sweet, little toddler essentially started a full-time job, being pushed to perform to his limit day in and day out.
Years and years of that routine was showing extraordinarily little return and causing stress and heartache for all of us. It saddens me to admit that I felt defeated and blamed myself for failing to help Skyler. I thought “could that damn doctor have been right? Did I miss the window of opportunity to catch him up to his peers? Is it too late for him to learn to speak, use the bathroom on his own and gain some independence?”
Therein lies the problem. That stupid pressure of timelines robbed both me and Skyler of enjoying all the fun moments of his childhood. Instead, I was fueled by panic and my entire mindset revolved around quickly fixing his deficits.
Then one day, as he approached age 8 or 9, it hit me. I am spending ridiculous amounts of energy forcing Skyler to fit into OUR world and do things the way WE say it should be done.
I have completely overlooked how he prefers to learn and grow. I needed to meet him where HE was!
Coming to that realization finally gave me peace and honestly, Skyler was visibly happier when I released him from the constant pressure to change and improve. Accepting that Skyler will continue gaining new skills and insights on his own timeline and in the way he chooses has allowed me to appreciate and absorb the many amazing, wonderful characteristics of Skyler.
Skyler is silly, smart, kind, tender hearted, determined, strong willed, resilient, emotional, and capable of doing anything he decides to do.
On the surface, Skyler presents as a non-verbal, non-toilet trained, non-independent 18-year-old, young adult. However, I now focus on who Skyler has become and no longer disregard all the incredible accomplishments he has worked so hard to achieve over the last 16 years – most of which the neurologist said he never would.
*As Featured on TODAY Parenting 3/30/21 and with Autism Society of America
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